A Daughter's Experience
On losing her mother to scleroderma
I always thought that my mother was a normal mother, but she wasn't...she had scleroderma. When we were kids she did all the normal everyday things that any other mother would do. She woke us up every morning and did the before school routine, took us to school, picked us up, drove us to practice, helped with homework, cooked and cleaned. We had the best mom! I didn't notice many differences between her and the other moms until I got a little older. The older I got the more chores I did, but most kids do start to help out at some point.
By the time I was a teenager I was doing almost all of the house work that needed to be done. It was very noticable that mom was exhausted after work and couldn't really do much of anything else except rest. She still did all of the running around she needed to do with my brother and me but we could tell she was forcing herself to do it. Her physical appearance had changed a lot from when we were little to when we were teenagers. People would stare at her hands and make rude comments, I'm sure it hurt her feelings but her response to those people was always, "I'm sick not deaf and don't worry you won't catch it". Some times I think it bothered me more than it bothered her. It was also in our teens that she would go to Florida for most of February and March. She just couldn't take the NY winter anymore...I'm not sure if that was due to the scleroderma or raynaud's but either way we hated that she had to leave, but it was best for her. I had watched her get worse for years and I realized that I would be lucky if I had her till 30.
My 20's came quickly and I was doing all the housework and a lot of the cooking. I shared the cooking resposibilty with my dad. Mom had to stop working all together because she just couldn't do it any more. She was starting to lose her breath even if the walk wasn't very far. She was on medication to help her breathing. I don't remember what it was but I know she had to get her blood tested once a month or so to make sure it wasn't destroying her liver. They eventually had to lower the dose because some of her levels were off. Before long she was in a wheel chair because she couldn't walk 10 feet without losing her breath. I hated pushing her around in that chair, I had to hold back tears everytime she used it because it made me feel like she was deteriorating. Other than that things were pretty much the same.
I was 23 when I got a phone call from my dad telling me that my mom was in the hospital because she was throwing up and it was black (internal bleeding), it was the end of July. I rushed home from my weekend vacation straight to the ER. When I got there she wasn't coherent. They had overdosed her because they didn't know her weight and had given her too much medication. She may have weighed 80 pounds wet and even that might be over guestimating. The Dr. counteracted one medication with another and she came around. I believe they said that the bleeding was due to something in her digestive system being backwards and that it was a birth defect. I knew better than that...it was scleroderma rearing it's ugly head. Once she was stablized she was put in a room so they could keep an eye on her and she would hopefully be home in a week. In that week she had a little fluid in her lungs and it would be fine just a few more days. She told me she felt good and to go to Long Island for the weekend. So I did.
I received phone call number two from my dad, but this time he told me she was in ICU. My memory is a little fuzzy in some places and this is one of them. I can't remember why she ended up in ICU but I think it had to do with the fluid and her breathing. I raced home from LI to the hospital crying the whole time. When I got to the hospital I composed myself enough so that I would be ok to see her but the minute I walked in the room I started to cry. She was hooked up to a feeding tube, breathing tube and catheter not to mention the IV for fluids and medications. I knew what was happening, my realization had become my reality...it was the beginining of the end and I knew it. There wasn't a day that went by that I didn't go to the hospital. We would talk through an ABC board that my grandmother made so that she could spell her responses to us since she couldn't talk because of the breathing tube. Her Dr seemed to think that she was getting better and that she could possibly be released as an inpatient in a rehab and have a trach put in so that she would be able to talk again and hopefully come home. It seemed normal that everytime something was getting better something else got worse. She wouldn't be able to go to the rehab.
There's one thing that she "said" that sticks out in my mind the most. My best friend and I went to go visit her after the beach one day and we asked her how she was feeling she spelled out..."I'm never getting out of here alive". We told her that she would be fine and she would come home but in my heart I felt the same way.
That was August 28, 2007. It was the worst exprience of my life and that final month plays in my head every day. That was almost 6 years ago, I was 23 years old. I am almost 30 now and since then I got married and had a little girl who is almost 4, I like to think she is a gift from my mother since the Dr told me I was having a boy my whole pregnancy. I need my mother every day and I don't think that will ever stop. I do the best I can to be like her but I know I'm not. I know she had more to teach me and tell me about life and I try to hear her but I don't always. I learned at the end of all this that she was a normal mother, she just happened to have scleroderma.
My brother and I, along with friends and family walk every year at the Manhattan walk in her memory. Scleroderma had bound me to those who suffer with the disease, I don't want other families to re-live our experience. We are all a family and we will find a cure.
- Patients & Newly Diagnosed
- Healthcare Professionals